Adventure D launch weekend!

On Friday morning 12th September 2014, after a night of minimal winks and maximum anticipation, my brother, Chris, and I made our way to CYE sailing center in Chidham West Sussex, for the inaugural Adventure D kayaking weekend!  The two day event in impossibly beautiful surroundings, would see eight fabulous people with diabetes, including Claire Pesterfield, a type one herself and diabetes specialist nurse to boot, along with a team of volunteers and instructors, take the attendees from 'never been in a kayak' to having advanced skills and being equipped with the knowledge of how to kayak safely.  

As the group started to arrive, any fears or nerves we had about the weekend slipped away as the smiling, keen faces of the fabulous group getting to know one another showed us that this was going to be a great weekend.  The weather was idyllic, the harbour was still and the gentle murmur or friendships being made set the relaxed pace for the weekend. We settled after our carb-counted meal and learned from Claire how we might adapt insulin and food intake for the water-based sessions the next day.

Saturday saw the group take to the water, starting off in practically unsinkable 'sit-on-top' kayaks, to learn about strokes, boats and safety.  Throughout the day were relaxed but regular breaks to allow for blood testing and tweaks to insulin or carb intakes here and there, and grow in confidence on the water.  The sessions ended with games - transforming the once-cautious sit-on-top users to competitive kayakers, losing any inhibitions they had in order to smash the other team out of the game, all the while donning fully-fledged Pyranha kayaks, and pulling out some professional moves in order to win the ball, catch the 'robber', or make it through the finish line first.   The laughter resounded through the harbour we called our own. Watching from the sidelines, this was the Adventure D dream come true, playing out in front of us.

After a delicious home-prepared and carb-counted curry, the group made for the local pub to share a drink with their new-found friends and to re-tell their favourite moments of the day. It was without doubt one of my favourite moments of the weekend; watching budding kayakers become friends and for some of the group, mix with fellow people with diabetes for the very first time.

Sunday saw the group of kayakers, now confident on the water and ready to put their new-found diabetes knowledge to the test, take to the water, keen and excited.  As we journeyed through Chichester harbour to the beautiful sights of Bosham, the instructors gushed about what a delight it was to teach this group. The Adventure D group.

As the Sunday came to a close and the Adventurers told us how they wanted to buy kayaks, had grown in confidence or didn't want to go home, we knew they had enjoyed it as much as we had. Every. Single.  Moment.

When I think about the first time I tried kayaking, a smile creeps across my face, and I can almost feel the warmth of the sun and the spray of the saltwater on my skin.  It was a clear day in late summer, there was no wind to speak of and the water in the harbour glistened as the rays bounced off the gentle undulating waves as the water ebbed and flowed.  That day was good.  This weekend, was perfect. 

Thank you to the wonderful people who joined us for the weekend, and made the event such a success.  Here are your best bits :)

Here come the Summer!

...which for a diabetic can mean only one thing: the low blood sugar chronicles are afoot.

There is a myriad of reasons why blood sugars rise and fall. Some days can be a whodunnit of usual suspects in the blood sugar battering game; other days the culprit is glaringly obvious. But it is usually this time of year that I know for definite that summer is on the way. Despite the usual moanings and groanings from the dismayed British people that our summer offers only drizzle and countryside mist, my blood sugars are the tell-tale sign that the country is indeed warming up. 

I love Summer. And I love the sun. But heat has always been a game-changer for me when it comes to low blood sugar levels. Everything from how often they happen, to how to predict them, becomes a battle of (near) epic proportions. 

Someone once told me it's because the body gets hotter and capillaries open wider in order to cool us down. That in return gets insulin pumping through the body much quicker, causing frequent and unpredictable hypos. I'm not sure if that's true or not (any ideas?), but either way, it's time to get the sunscreen out people. Summer is on its way. 

So if we needed any sign that the Summer monsoon is a-comin', my CGM trace suggests a big old yes. 

Say HOW many carbs?

It's easy to get complacent with type 1 diabetes.  On a daily basis the disease demands frequent blood testing, carbohydrate calculations, preemptive dosing, correction boluses and walking the tightrope of 'too high' and 'too low'.  It's a fine line, oft stepped over.  But as it has featured as part of my life for the last 27 years I have learned to guestimate much of my foo - usually with a fair amount of prevision - making much of  daily my life easier.  On average a bowl of pasta is 7.5 units; an omelette, 1.5 units.  For the most part I successfully navigate my way through the day with only the occasional mistake.  But guessing because you need to, and because you are being lazy with your approach to diabetes, are different things.

I have a smartphone - one equipped with just about every diabetes app going which makes eating out almost impossible not to carb count, if I wanted to.  Yet this week, when I met up with everyone's favourite Ninja and sat enjoying my Costa Chai Latte in the sunny harbour of Gunwharf Quays while putting the world to rights,  I wasn't quite giving the 'due care and attention' to my diabetes that it demands.  Having not been bothered to spend time on any of the resources I have to hand, more interested in catching up with friends, I threw a somewhat reserved 2 units at my super-sized lactose-swamped treat, because I wouldn't want a hypo to ruin the lovely glucose trend I'd been sporting that morning.

Around 40 minutes into our coffee and conversation, I started to feel the tell-tale muggy head, heavy muscles and strange sense of smell of a high blood sugar creeping in.  I glance down at my CGM receiver in my hand and...wait...what the?  14.1 mmol and rising very fast? I was 5 mmol when I got here!

I dove into my bra for my pump (present company of course being one of the few I can do this with!) and bolused another 3 units.  But I reeeeeally wanted another coffee because it tasted so good (that should have been my firest major clue that this would be more than a 2-unit treat...) so I gave in and racked up another.  This time I took 4 units - because I wasn't going to be making that mistake again!

As Ninja and I bid each other farewell and went our separate ways I started to wonder... what if the sweet tasting delights of the Chai Latte were less about spices and more about sugar?  It was very sweet, after all.

I finally instructed the brains I was born with and used the technology in my hands to tweet Costa in the hope they may pick up my question but, without response, I made my way onto their website.

It's times like these - when realising I have unwittingly devoured 175g of carbs (which should have been around 17 units of insulin and for which I had given a pointless 2) that I remember that I cant't get complacent with diabetes on board.  Even my 3 unit correction barely touched the sides of the first coffee, let alone the second. And no wonder I eventually danced with 20 mmol before finally the food wore off and the right correction was given.

I have to remind myself of the hidden carbs that most processed foods have in them, and that while it's OK to have these treats, it's not OK not to bolus for them.  Lesson learned Costa, lesson learned.

Do you get complacent and pay the price?

Natvia: giving back pancake day to people with D!

It's possible that when Natvia sent me two tubs of their all natural sweetener to try out with accompanying Bundt tin, they may have been overestimating my cake-making abilities just a tad.  The Great British Bake-Off may be all the rage at the moment, but unless they appreciate a beautifully microwaved omelette, I won't be on the show any time soon.

The people at Natvia: clearly not familiar with the
Presswell cookery skill level.

But there are plenty of ways I could use a decent sweetener in my life.  Since products containing aspartame became wildly unpopular after consumers discovered the many damning reports of links to cancer, toxic ingredients, notorious side-effects and the often too-bitter after-taste, there hasn't been a great deal on the market. Until recently.  

Natvia, a sweetener made from the Stevia plant, is a superb alternative.  The texture is similar to that of sugar, but with a cleaner, lighter taste.  In short, the leaf of the Stevia plant is ground up and blended with Erythritol, a naturally occurring nectar (found in melons) in order to give it the grainy texture of sugar.  It is low GI and can be used spoon-for-spoon in place of sugar.

Most of the time I've learnt to just cut sweetener out all together, but there are two major - very major - exceptions.

Coffee, and pancakes. 

The Presswell's do lent!

There is simply no substitute for a delicious morning coffee (or ten) with a dusting of sweetness to take the bite out of it  Sadly, aspartame-based sweeteners have a knack for adding a cheek-sucking bitterness that can ruin even the finest rich Columbian. Natvia, on the other-hand, with its sugar-mimicking taste gave me the sense for the first time in years, that I was enjoying a genuine barista-made coffee.  

The other treat that delights the palates of those living in the Presswell household, is pancakes.  And not these fandagled Banoffee/chocolate-marshmallow/peanut butter/cocoa crunch/strawberry ripple/chocolate raspberry pancakes.  I mean the genuine article: plain old-fashioned sugar and freshly squeezed lemon.  But with 5g of GI  blood-glucose spanking carbs in every teaspoon, sugar is a nightmare for people with D the world over.

This year however, I was just 6 pancakes into the stack Jamie had prepared us by the time I was thanking the gods for Natvia.  Never have I enjoyed a lent so much in living memory.  Mainly because diabetes and something called the Glycaemic Index, had other ideas!

So thank you Natvia, for giving me back pancake day!

You can get yours by shopping here. And remember, pancakes are for every day, not just for lent!

Off-label CGM use: words of caution from my consultant

I spent most of today thinking my 24 day-old sensor was 'way off', because the calibrations were rarely within 1 mmol; something I have come to expect from my trusty companion.  When I wasn't scoffing at the result, I was resigning myself to pulling it - something I hate doing when I've managed to get almost a month out of it.  For some reason I become attached to a sensor the longer it lasts and the better it performs.  But I thought that this might be a good opportunity to test out a word of caution my consultant had given me in clinic some months ago.

When my consultant found out that I was using my Dexcom G4 sensors for waaaaaay longer than the 7 days they have CE approval for, he offered me a word of caution.  Two, in fact.  Firstly, doc was worried about the damage I might be causing to my might-be-needed-one-day cannula sites, as I was regularly getting 21-28 days out of sensors - up to four times longer than advised.  The second concern he had was that over time, the peaks and troughs the trace would show me would be less sharp as the sensors response to glucose in the body becomes blunted, meaning you won't get the precision you are looking for and could even miss the highs or lows you bought CGM to catch in the first place

As I downloaded the data I was writing the 'watch out for this, folks' post in my head already. But as I looked at the picture, this is what I found:

The red dots are my blood glucose calibrations today, while the purple trace is the results my sensor was providing.  I felt surprise as I looked at it, having been convinced this was 'the risky bit' my consultant had warned me of.  But even though the calibrations felt 'way off', when you look at it though the objective eyes of hindsight (and some kick-ass software), the valuable trend information (that we have so banged into us is more important that the 'exact number') is still there.  At my highest point the sensor was spot on, and at my lowest it was still reflecting the changes in my glucose trends.  In fact when you really look at it, the CGM still appeared to be picking up a few more peaks and troughs than my BGs did, as it should.

Perhaps it felt that way because this is the kind of data you see would normally see on day 5 of week 1, when the sensor has had a chance to be calibrated numerous times but is still a 'fresh' sensor, in the long run:

This day was generally filed under 'not so great'.  Any BG of 18mmol at 3am is always filed under 'not so great' (unless you are normally 24mmol at that time of night, in which case, go you!), but despite the crazy roller-coaster day, the only two calibrations I did (unusual, for me) were both absolutely spot on.  Perhaps it is because of this kind of precision that I have become so accustomed to that threw me off when the calibrations seemed so 'far off' today. 

But having seen the data from today and realised that the sensor was not as AWOL as I felt it was, I'm going to keep hanging on.  Despite being 24 days in I've yet to see more than one set of ??? marks, meaning communication-wise the sensor is still going strong and speaking to the received without any problems - something that can falter in an older sensor.  And although my calibrations are a little off bulls-eye, the trend data is still more valuable than finger sticks alone, so I will plough on until this one gives up the ghost for good.

Hopefully sometime in 2015.

Keeping my eye on...erm...my eyeballs

When my eye care was transferred from the community clinic to the retinopathy specialist in the Summer of 2009, I didn't really understand what that meant.  Rather, I understood it - the fact that something about the condition of my retinas had deteriorated - but I didn't really understand the implications of that referral. I figured that at 23 years of having had T1 diabetes, this was fairly standard procedure and that changes would, perhaps inevitably, always happen. 

I have never resigned myself to any particular 'fate' with my diabetes.  And since becoming an adult and emerging from my teen years (see also: total disengagement from all forms of clinical care), I have strived to take care of myself. But when you have T1 diabetes you have to learn to face up to the fact that complications may happen.  Although good blood sugar control is widely accepted as the most effective way of reducing the risk of complications, it does just that; reduces risk.  It could, and might, still happen.

As part of that referral my appointments were ramped up from every 12 months to every three, and I no longer saw the friendly nurses at the clinic in a matter of 20 minutes as they photographed my eyeballs and sent me on my way.  Instead I moved to two-hour appointments with an hour-long wait with one of the senior Consultants at Queen Alexandra's Opthamology department, a quiet but personable man known to me only as Mr Booth.  

It wasn't until around a year after I first attended, and 6 months after starting my insulin pump journey, that I started to really ask about what 'all this' meant.  Mr Booth explained to me that a number of years of high blood glucose (BG) levels had left damage to my retina.  He told me to imagine that I had been scratching away at the same spot on the back of my hand, and that eventually that scratch would bleed.  He explained that BG levels over recommended levels (as opposed to the 'non-recommended' ones I had been having fun with) left this kind of damage on the retina.  He explained that my non-proliferative retinopathy (small bleeds) were not too great a risk at first, but that they were beginning to change and I was now considered at the transitional stage to proliferative retinopathy. In human terms, this means that in order to cope with the changes in my eyes, my body would start to grow new, smaller, weaker blood vessels, and that when these break from the incessant scratching I so loved they would leak larger, more damaging amounts of blood onto the retina.

Mr Booth gave me some trusted resources to go to to learn more, and always asked me to continue my hard work.  He was always kind and gave me the truth.  Sometimes that was a hard truth.  But I'm not a 'sugar-coat it' kind of girl (mainly because sugar was not about to help this situation.  Pun-tastic, yah?).  I like to hear it as it is.  It makes me take things more seriously.

So why is retinopathy so serious?  Well, this is why. When the capillaries begin to bleed the vision you are left with until blood disperses (which can take weeks) looks something like this:

As I'm sure you can imagine, life through these eyes is a damn-site tougher.  There would be no driving.  Everything from shopping to working, and cinema to time-telling - everything - would be a challenge.  And it wasn't a challenge I was ready for, or ready to accept, anyway.

I knuckled down, exercised, mastered my pump, bought myself CGM and worked really hard at my diet to find more blood-sugar friendly foods. And I secretly prayed to a God I don't believe in that things wouldn't get any worse.

Dilated pupils.  And approximately four-inch-long lower eyelashes?

January 2014 would mark four years since I first asked Mr Booth what was going on.  January 2014 marked the four-year anniversary of pumping.  And January 2014 also marked the time I was able to rejoin those nurses at the community clinic.  Today marked my annual eye-dilation and photo-shoot and the evidence was there; after four years of constant efforts to keep things on a tighter leash, my eyes have finally shown the progress the Opthamologist needed to see in order to sign me off from their intensive service.

My latest set of eyeball photo-shoots evidenced that not only had I been able to stave off the transition into established proliferative retinopathy, but I had also managed to reverse the damage and put myself fully back into non-proliferative retinopathy (also known as background retinopathy).  And the better news still is that background retinopathy can be reversed even further, returning to a normal, healthy eyeball.

This is, of course, my new aim.

Cateract.  Sparkly.

My cateracts are still in full swing (another complication of diabetes: it speeds everything else up), but they are operable and not something I worry myself about at the moment because I still have
what they call 20/20 vision.  

Complications can happen, and I will be ready for them if, or most likely when, they do.  But in the meantime, if you've been diagnosed with retinopathy and think 'well that's it', (because that's what we are often led to believe), that's not it.  There are ways to reduce your complications and give yourself the best chance to stay complication-free as long as you can. 

Wanna get intimate?  Then check out my balls.  

June 2009.  Haemorrhages showing on the left side of the eyeball (red dots)

January 2014.  Haemorrhages vastly reduced and showing signs of reversal.
And a much healthier looking eye all-together.  

Bloody Dexcom sensors: live or die?

Now and then I enjoy a little break from wearing my Dexcom sensor.  It takes commitment to wear a CGM 24/7 because even though it is a fantastic tool, with that and the insulin pump attached to my arm, I can look a little 'AI' at times.  It's a family joke that I am slowly replacing my organs with mechanical ones so that I can live forever as a machine while they wither and die, but realistically I can look a little experimental at times.  A few days off here or there, sometimes when things are going well and I rely on it less; sometimes as things head South and I need some 'alone time', can do the world of good.  There is no rule book (and even if there was, I probably wouldn't follow it).

"Ah, shit!"

Halfway through the insertion today I see a pool of blood collecting beneath the transmitter cradle.  It would seem counter-intuitive not to want blood on the sensor, seeing as it feels it should be reading my blood sugar levels, but it's not. The sensor shouldn't really be in contact with any blood, because it reads the glucose in the fluids in my tissue. And from what I've read in forums and support groups, blood on the sensor isn't always a good thing.  

"Please, please let it work, this cost me £50 and I'm on my last one!"

But I've done 'gorey' diabetes more than once, so maybe it'll be OK, right?   It'll be OK, these things are surprisingly tough.

Two hours later the alarm goes, it's time to enter my blood readings. Good news I guess, except that no matter how many times I enter it, I get this confused looking symbol:

A drop of blood and a timer.  

No matter how many times I enter a number, neither symbol disappears, and it doesn't wake up.  So I wait...and wait.

"Please... C'mon... Please..."

I leave it 15 minutes at a time, telling myself that after three hours I'll re-start the sensor giving it another try.  Perhaps the blood will dry.  Maybe if I shower it will wash away from underneath? 

Um, what now? That's new. I've not even seen this one before.  OK, well, 15 minutes it is.  See you in 15.

Fifteen minutes passes and my handset is still giving me all kinds of strange results.  The timer disappears and a 'tick' arrives, but as soon as I enter a new reading, the tick re-appears, as does the other drop of blood.  Meh.  It's pretty much a sure thing this sensor is on its way out, but the £50 note is burning a whole in my mind.  Maybe just 10 more minutes...

SHE'S ALIVE !!!!!!!

And man do I have some work to do to get the reigns shortened again.

Surfing with diabetes: Face-planting and packing the right kit.

When you start dating, you could choose to put on your best clothes, douse yourself in perfume and dine at the most expensive restaurant in town.  That, is a great way to get to know each other.  The other option of course is that you could, as Jamie and I did, drive to Cornwall, squeeze into a frighteningly tight wet-suit not designed for someone with a chocolate habit and throw yourselves repeatedly into the powerful battering waves of the North Atlantic Ocean.  While doing so, you will of course also face-plant the water over and over again with blind optimism, sheer determination and in an attempt to 'impress' the other.

We first caught the surfing bug when we stumbled across  Escape Surf School, back in 2007. Based under St Christopher's Inn Hostel, Newquay and overlooking Towan beach, it was a beautiful place to be for our first date.  On the first morning we immediately clicked with the instructors, Mike (pro-surfer, coach to the British Surf Team and possibly the most friendly man alive) and Will (awesome guy who's won countless competitions, coached the British Junior Surf Team and can even surf without a surfboard.  Show off.).

Wet-suit unfriendly
diabetes paraphernalia.  

Surfing is a challenging business: not in the least for a person with Type one diabetes. Let's put aside the issue of blood testing in the water (extreme aqua blood testing?) and think about where the hell you keep your glucose tabs, insulin, blood test meter and insulin pump when wearing, well, little more than a skin-tight neoprene wet-suit. Considering there is barely space for my ample rear-end, finding space for my diabetes paraphernalia is even more of a challenge.                   

                                                   

This September Jamie and I made our way back to Cornwall for our annual anniversary trip, and what better way to celebrate than to head back to our favourite surf school, catch some waves and work on our surfing style (see also: face-planting).  

Before heading into the water on day one my blood glucose was a fantastic 9.0 mmol: a great number pre-surf.  With a swig of Lucozade and the removal of my insulin pump, I surfed for the whole session with no problems, and as we got back to Escape's welcoming warm showers and Belushi's legendary burgers, I was rocking a perfect 10.0 (mmol).  It was a resounding success, by anyone's standards.  As was my face-pl...I mean, surfing.  My husband on the other hand, rocked it.

Jamie, who tells me that he is expecting O'Neill's call any day...

Day 2 however told a different story.  My pre-surf BG test revealed a 4.0 mmol and as 3.9 mmol is technically already a hypo, I devoured most of my first bottle of Lucozade before we'd even left for the beach.  I put the remainder of the bottle and my blood test kit into Escape's first aid bag, and headed in the direction of the waves. Why it didn't occur to me to take my second (full) bottle of Lucozade I will never know, but one hour in and after a monster wipe out, I felt the tell-tale signs of a hypo arrive.  I told Will I was heading in, enrolled the help of Jamie to babysit my board while I tried my hand at extreme aqua blood testing, and made for the beach.  Escape instructor Sarah had already spotted me wandering in, dragging my board behind me in a less than cool-looking way, and came to check things out. Calm but attentive, she jogged off to get my testing kit, like it was no big deal. There is nothing worse than a panicker when you are feeling hypo, so Sarah's chilled-out attitude was a breath of fresh air.   

Thank you to the photographer, for the photos...
...and the shorts!

Luckily for me the photographer, there to catch our most impressive surfing attempts (see also: watery face-plants), let me to dry my hands on his shorts because I forgot to pack any tissue to dry my fingers (worst prepared diabetic ever award?).  But then what better way is there to get to know someone than to wipe your salty, water-wrinkled hands all over their shorts?

As it dawned on me that my second bottle of Lucozade was at the top of the hill in the changing rooms, I prayed I was just tired from the surfing (see also: sea-bed face-planting). I watched nervously as the meter counted down.

5, 4, 3, 2, 1.

3.2 mmol.  

"Shit."

I looked back up at the hill I might need to climb, wishing that the last mouthful of Lucozade I just finished would be enough to raise my BGs.  I knew it wouldn't be.  

"Hey", I heard from over my shoulder.  "Here you go, have these."

As I turned around Sarah placed in my hand a full packet of glucose tablets and smiled. And just like that, her eyes were back on the surf watching the surfers get acquainted with the sea-bed (see also: beachy face-planting).

I let out a sigh of relief.  

It had never occurred to me that the surf school I learn with might need to be diabetes-savvy. I have always been fiercely independent in my management of diabetes, so other than the mandatory 'type one diabetes' on the medical form, I don't really demand the help of others, or expect them to be prepared.  But as I discovered this year sometimes, they need to be. Because even someone with 26 years of diabetes experience can mess it up sometimes.  

Wild dolphins, who swam amongst us for over an hour

My own complacency after just one successful surf could have brought me crashing to my knees and ruined a fantastic surf (see also: every kind of face-planting there is), but thankfully for me Escape Surf School were totally prepared.  Not just in the amount of instructors they have watching over our inexplicably comical efforts to walk on water, but also in the supplies they took to the beach and the speed at which they calmly dealt with my efforts to derail their lesson.

Escape, thank you. Not just for a weekend where I experienced wild dolphins playing in the harbour while we surfed, but also for being prepared for all eventualities: especially unprepared people with type 1 diabetes.

Can you guarantee the surf company you chose have supplies if you need them to?  I can tell you first hand that Escape do. 

See you next year! 

Me, apparently trying to kill Sarah

Costly business

Paying for your health care, be that in the form of medical insurance or prescriptions, right the way up to paying for every single hypodermic needle, and whether that's 'right' or 'wrong' is of a matter of personal opinion and can start many a heated debate - particularly in a culture where most of our care comes free.  

We hear horror stories all too often about our friends in the US left lying on hospital gurney's while their families scrabble around for money for care, or children in India who in 2013 continue to die because they cannot afford insulin.  So how do I feel about paying for my own care?  Well, as someone who is fully funded for everything else that I need, other than Continuous Glucose Monitoring (CGM), I can live with paying for something here and there.  My view is that if I value my CGM enough, I will pay.  But CGM is an expensive business; disgustingly expensive, in fact.  

Priced at £62.50 per sensor (plus p&p) and with each sensor lasting only 7 days (how long it has CE mark approval for) to use it continuously would cost  - and I suggest you sit down for this - £3250 per year to fund (not including the initial outlay of £975 for the stand alone unit).  You still there?  Not fainted yet? 

Seeing as I don't spin gold or sweat pound coins, I simply can't afford that kind of money.  Show me many who could.

As a result I have had to find ways to make my sensors, or my money, last a little longer.  Over the last few months I have discovered little ways to make the cost a little more affordable for me.  So here are my Top 5 experiences of getting a little more out of the system.  

Please remember that I am NOT a diabetes professional, medical or otherwise, I DO NOT speak for Dexcom, Animas or Advanced Therapeutics and I am NOT suggesting anyone do as I do.  Now that the legal bit is done and no-one can sue my rear end, here is how I do it:

1) Consider sensor sourcing.  Until recently I purchased my sensors from a fantastic company called Advanced Therapeutics.  Fast, friendly and professional, they offer a great service.  But they aren't the only provider of G4 sensors in the UK.  Animas, with the introduction of the Vibe insulin pump, also sell the sensors.  I had believed that to buy from them I would need to be on a Vibe pump (which I'm not).  But after a recent conversation with them I discovered you can register as a private customer and buy sensors from them.  Cheaper.  My previous costs were approximately £135 for 2 sensors plus postage and packing at £7.50 per delivery.  Not only do Animas only charge £100 for 2 sensors, there is no p&p.  SOLD.  To register with them, you need a letter from your team to state that your data is reviewed in clinic and to complete their VAT exemption for.  Contact animasUK@its.jnj.com for more info.

(**** IMPORTANT UPDATE: PLEASE NOTE THAT SINCE 2014 (ACTUAL DATE UNKNOWN) ANIMAS NO LONGER SELL DEXCOM SENSORS TO PEOPLE WHO ARE NOT VIBE CUSTOMERS****)

2) I wear my sensors for longer than I should.  I do NOT recommend anyone do this as it is against the guidance from the company, but if you do then hey, that's your choice.  I wear my sensors for as long as they will go for or if they feel uncomfortable at all (not happened yet), which has so far varied between 8 and 36 days. When it comes to the system warning me that the sensor is expiring I simply restart, telling the system I have inserted a new sensor, when in fact it is the same one.  Boom.  Money saved. Mwahahahaha !

3)  Wearing my sensor on my arm.  It is fast becoming the industry's worst-kept secret that wearing the sensor on the arm seems to make it last longer.  I don't know if this is because the arm is less jiggly (I got a lotta jiggle) or some other mystical force but for me, arm sensors go significantly longer than others.  The one I removed this morning was 36 days making the cost go from almost £9 per day, to £1.70 (or £1.40 on the Animas sensors).  Granted it is a reasonably rare occasion to get this long, but my last 4 sensors have all done between 22 and 36 days.  So they are consistently in the 3 week onwards time length.

4) Give it a rub.  Oo er.  This one comes from everyone's favourite German blog's Ilka, who told me that when she gets the ??? symbol, she massages the site for a minute or so, making it last longer.  I wasn't convinced, but gave it a try and every single time my struggling sensor has fired itself up again.  Give it a try, does it work for you?

5) Get a Vibe insulin pump.  In the UK you apply for a new funded pump every 4  years - as the warranty runs out.  The Vibe insulin pump has integrated Dexcom CGM, meaning you don't need the standalone unit (£975 of your best pounds). That starter kit includes the unit and the software etc, but no sensors (seriously, a starter kit with no sensors?) so to get started you need £975 plus £250 for 4 sensors and £7.50 p%p.  That's £1232, if you were wondering.  However, If you order the starter kit that integrates into the Vibe pump, rather than the stand alone unit, it costs £450 from Animas, including 4  sensors.  That's right, 1/3 of the cost over the standalone unit and you can get started straight away, saving the cost of 16 sensors while you are at it. Maybe when you are due to review, this pump would be worth a look.

So there you have it.  No, I haven't figured out how to make this cheap.  Yes, it continues to be a shockingly expensive tool, but that doesn't mean it isn't worth it; it is worth it.  And hopefully this post has given you something to think about if you are considering CGM sometime in the future or are using it and looking for ways to cut the costs a little.

Big love, as always.

Unleashing the stoopid...

It never fails to amaze me that despite having overall normal diabetes control I still have days when all my diabetes know-how goes out of the window and I make decisions which would realistically be out-smarted by a sock with 3 brain cells.  By 'normal' I of course mean a fair amount of steady days, with the odd bat-crap crazy one the next.

Overall, I maintain an HbA1c of around 7% and don't know any of the staff at Accident and Emergency by name, so I consider myself to be negotiating this sometimes wonky path with reasonable success.  It is usually (and reliably) the times when I am under a touch of stress that I lose my ability to function as a reasonably sensible PWD with the ability to make choices.  Clever ones, anyway.

Today was my driving test at work.  Not the first ever one; I passed that 11 years ago.  This one was compulsory with the new job I have been looking forward to starting so very much.  All I needed was a good blood glucose (BG) to work on so that I didn't either a) have a hypo before the test and not be able to take it (hypos mean no driving for 45 minutes under DVLA rules) or b) having a hypo during the test, which would be embarrassing and again, mean no driving for another 45 minutes.  That's all I needed to do.

I was running between 6.5 and 7 mmol all morning from 7am when I woke until 12.30 when I arrived at the test center.  For me, that's a pretty sexy day and exactly the kind of BGs I needed to make this test a go-go, rather than a no-go.  As I arrived, I felt the pangs of hunger creeping in.  Mistaking these for pangs of a familiar slow-moving low BG, and panicking that a hypo could ruin this chance to take the test - an important landmark in my new career - I glugged down half a bottle of juice, 20g of pure fruit sugar.

I was 13.4 and feeling less than jolly by the time my test came around.  Had I been watching in from the outside I could have told you it would happen; I would have giving myself a gentle kick in the leg to stop myself drinking anymore.  A sip, maybe, to ward off any stealthy hypo.  But half a bottle?

Seriously.  Dumb.

What would almost undoubtedly have remained a 5-6mmol (if anything, going up slightly with the adrenaline), was battered for a BG more than double by the time I had finished unleashing the 'stoopid' on myself.

But hey, I passed the test and lived to tell the tale.  Maybe now and then it's OK to unleash the stoopid, if you can spot it when you do it.

Do you do this kinda stuff, too?  You know, the stoopid kind?

Doing the hard work for me

I've now had my Dex for a little over 3 weeks.  The post about first impressions is still under way because I have been marvelling at it so often that I have yet to find time to say all I want to say about it; I am permanently stuck on my 'amaze' setting at the moment.

But something I wanted to quickly share with you today was just how the Dex proved its value when I emerged from my post-burnout 'lull' and decided to once again brave the gym.

Learning all of the exercise rules all over again - like how long to leave between lowering my basal and starting exercise, or how many carbs I need before I workout - can take a while.  In fact, as it has been a month since I was last in the gym my body has been busy changing its insulin needs at an alarming rate, so I wasn't sure what to expect. 

After a long day of high BGs it was a welcome sight to be under 10 mmol (180 mg/dl) by the time I reached the gym.  But the downward trend at 7mmol made me a little wary so I popped a couple of Dextrose, just in case.

I had been thinking it would just be nice to know what I was when I exercised, rather than relying on being 'OK' during exercise and testing my bloods as quickly as I can after.  So when at 27 minutes in I was facing this little chart, I new that my first day back would need to be treated as a 'work in progress'.

Lucky that I had my Dexcom because only 5 minutes later in the gym cafe, I was facing this little beauty. You gotta love the 'YOUR HEADING DOWN FAST, LADY' trend arrow; it's a pretty good early warning system

Why do I love my Dexcom? 

Because I don't get hypo symptoms during exercise but today that didn't matter; My Dex was all over it.

Dexcom G4 Sensors - Life Tally

It is the diabetes community's worst kept secret that Dexcom CGM (Continuous Glucose Monitor) sensors last well beyond the seven days they are approved for.

While I am not a diabetes professional and would never recommend using a sensor for longer than the approved seven day period, I do bend these rules myself. I may not be a diabetes professional, but I am a professional diabetic; I manage this beast full-time and have had to find ways to make CGM a more full-time part of my self-care.

In the UK, there is no such thing as medical insurance and as yet there is no guidance on providing diabetic patients on the NHS with sensor funding. This will change one day, I hope. But until it does I have decided to fund my sensors myself and at £62.50 for each sensor, wearing them for only seven days is just not an option for me; being more economical with them is the only way I am going to make this work.

In fact, it was one of the reasons I chose a Dexcom in the first place.

So I have made the decision to wear each sensor until:

a) the sensor expires naturally
b) the results become unreliable/inaccurate
c) any irritation occurs (indicating my body may need me to remove the sensor before an infection occurs

I have decided to keep this tally of my Dexcom sensor lifespans out of interest; mainly my own, but I suspect there may be other people out there with an equal interest.

I hope you find it useful.

______________________________________________________________________

Less than 7 days	7-14 days	15-21 days	22-28 days	29-35 days	36+ days
0	2*	14	11	1	0

           ______________________________________________________________________


* These two sensors laste 8 and 11 days respectively, on a holiday when a sauna was being used daily.  Having never had another sensor last less than 14 days I believe these conditions contributed to 'early fail'.


Post-script:  I have changed the chart to just hold numerical information for ease of reference.  

Alarming...

Last night I boarded my plane home from Scotland with my pump alarm peeping away in my pocket. Through the day I had acknowledged several of these alarms, squawking away at regular intervals, aimed at informing me that I was running low on insulin.  I 'okayed' the alarm and clipped the pump back on to my waistband, having done the quick calculation in my head that 3 hours travel time would put me back at home as the last 4 units ran dry.

Of course, when I actually met up with Jamie at the airport I was full of the news of the day. I chatted to my him, ate my dinner and went about my evening fun, eventually crashing into bed; worn out from the day's events.

My insulin ran dry at 10pm.

When I awoke this morning and checked the trend graph on my Dexcom G4 (my new favourite thing to do), I saw a beautiful straight line.  It was heading down slightly heading towards the low 4s (70s) so  I pulled out the pump, intending to lower my basal rate at 4am, having seen this trend several nights in a row.

Then I see it: Empty reservoir symbol.

 "Shhhhiiiiiiiiiitttttt!"

Jamie, poor guy, got a slightly rude awakening this morning.

I remembered my calculations from the day before and that I must have been out of insulin for 8, maybe more, whole hours.  I bolted to my kitchen, washed my hands and pulled out my blood test kit, convinced that my precious Dex (Lorraine) had made a mistake.  She was telling me I was 4.9 and fairly steady.

Longest five seconds ever.  

5.2 mmol...

"What?!"

I have no idea how it happened.  My diet has been insanely good recently and I had a seriously busy day on Friday so maybe, just maybe, I was due to have an enormous hypo during the night that didn't happen because of the extra activity and low, low carbs.

I've been over what happened again and again, convincing myself I had more time that I thought, but each time the calculation is correct.  10pm.  I was very, very lucky.  But it has left me thinking: 'why is the alarm on my pump for 'your reservoir will need filling in the next 12 hours', no different to the "holy crap Batman, you're flat out of insulin' alarm, and why is there no escalation of noise/urgency when I don't acknowledge them?

And as this is not the first time this has happened, I'm slowly realising that perhaps this is something I need to look for in a new pump.  I renew in 10 months.

So, what pump do you use, and are the 'out of insulin' alarms different to the 'low reservoir' alarm?

   Type '0'?

Or just a very lucky wally?

Animas 'Sports day' event. Do it.

Last year I had the pleasure of attending the Animas Sports Day event held at Loughborough University, to blog on behalf of Shoot Up or Put Up, who were busy doing other less exercisey things.  Bonus.  The event is for those over 18 and sporting (no pun intended) a pain in the backside disease called Type 1 Diabetes. 

Exercise can be one of the most challenging elements of type 1 diabetes.  For some, it makes their blood sugars skyrocket, while others are left plummeting to the depths of a nasty hypo before even having left the gym.    We all know exercise is fantastic for everyone, everywhere.  You have to have lived under a rock to think otherwise. But the challenge is especially great for people with diabetes.  On top of all the benefits like improved blood sugar control, increased insulin sensitivity and circulation benefits, it is also an excellent way to keep your weight in check, something I have struggled with for years.  But managing blood sugars during exercise is no simple task, which is where Animas come in.

Well guess what, even though you may feel the blood sugars you have during exercise are totally random, they aren't.  Not even close.  There is science behind all of it and this weekend tells you all about that, without needing your own Degree in Physiology and Endocrinology.  This weekend gave me the footing I needed to grab diabetes by the horns (yes, it is cow-shaped) and give it a right good seeing to.

Oh, and the weekend is freakin' fun.

As someone who has managed to overcome many of my exercise (and weight) demons by taking part in this weekend, I urge you to go.  And I don't just mean those who love their sport and are already super-svelte and exercising regularly; this weekend would also benefit those who struggle with weight, managing blood sugars and are lacking in confidence about where the heck to start.  In fact in my opinion, we are the ones who need the biggest 'leg up'.

The time has come to register, so contact sportsday@its.jnj.com for more details and to reserve your space.  If all goes to plan, I will even be there myself talking about the challenges of weight loss and diabetes which, thanks to this weekend, are now a lot less challenging.

The best news is that newcomers are also being treated with priority which is great news as the spaces are normally filled by those who have come to learn what a superb weekend it is.  So take them up on it! If you are free on the 10th, 11th and 12th of May 2013, come and join in! 

If you fancy seeing how last year's event went, check it out below:

AP (off for a speed jog, because I can)

A rest is as good as a change

I consider myself to be someone who is normally pretty much on target when it comes to my diabetes. I manage to walk the fine line between paying close attention and obsession on a daily basis with relative ease, which helps me to achieve reasonable control of this confusing and sometimes almost comical condition. I have done this for 24 years now and it almost seems normal to me. As normal as type one diabetes can be anyway!


I haven't been sectioned yet (I must stress the word 'yet', it can't be far off these days), despite the constant calculations, second-guessing and sometimes sheer frustration that diabetes can throw at you, especially when it feels like Freddie Flintoff has just bowled a 90 mile an hourer at you while someone else distracts you with a giant Krispy Kreme. I am not someone who claims to have 'perfect' control, whatever that really is is. And I am not someone who says control is easy - because frankly - those people drive me crazy. Either they are lying or they are very, very, very, VERY lucky. I am not sure which of those I prefer to believe, but part of me hopes they are just lying. At least that way I may not be perfect, but my honesty is something I can be proud of, even if it means admitting that sometimes I get it wrong. Very, very wrong.


I have rambled on in the past about how I can have a bit of a Jeckyl and Hyde thing going on at times and unfortunately this week was one of those weeks. More so than ever. I have been managing blood sugar swings I imagine similar to that of an out of control sugar-crazed Oompa Loompa at Mister Wonkas factory. Before I went onto an insulin pump, I could see blood sugar swings in any one day ranging from 2 mmol to 32 mmol and spent most of my time terrified of the blood glucose meter. I would never know what it was going to tell me. Occasionally it would be in range, sometimes it was spot on but most of the time it would be wildly uncontrolled. Leaving me emotionally drained, frustrated beyond belief and scared of my future.

As soon as I started on the pump things got a whole lot better. Blood tests became more predictable and a whole lot less scary. For the first time I was able to expect more from my control and diabetes became something I could understand more clearly and dare I say it, embrace.

Over the last week, there have certainly been a few moments when I could have punched my pancreas in the imaginary head or stamped on my pump. Don't get me wrong, my pump is still doing just what I ask it to and I know that despite being a lazy-ass semi-useless organ only one step up from an appendix, too much time has gone by for me to really blame my pancreas anymore. I can admit that I'm still moderately bitter seeing as I didn't do anything to warrant it going on an extended holiday, but what's the point now, other than having the odd moment of blame?

Whatever the cause, I have decided to just unplug for a couple of days. I love my pump, and I love the freedom and quality or life it has given me. But 'it' isn't nice; it is not attractive or even easy to live with. It took a lot of adjusting to and there are moments when I tug in the wire or notice it protruding from under my clothing when I am reminded of just how much it takes to be prepared to do this forever. So when things are all up the shoot and I have no idea why, I feel the need to give myself a day off.

I know that when I am off the pump, I need to follow a much stricter low carb diet, have to keep a closer eye and that it is only a matter of 48 hours before I am desperate to get back on it again, because my sugars will have gone from bad to worse. But in my experience, sometimes you need a little reminder of why you reached this decision in the first place. I will be glad to get that tubey robot back plugged back in after two days, so maybe that is what this little episode is all about; learning to love my pump again.

Anyway, I will post again in a few days when I have no doubt thrown my testing kit at the wall [again] and will be gasping to get off the injections and back on the pumping way of life.

God knows I need a reminder of why at the moment!

Anna - tubeless for the first time in 11 months.

Looking back: A year with a pump at my side

There are many things which will change your life. Literally. Choices you make and experiences you encounter can be both the making of you and the breaking of you. Perhaps these milestones are different for all of us, or perhpas we share many of the same. For those who have children the moment you conceived was no doubt a moment that changed the path of your life forever. For those who travelled, maybe the things you experienced while emersed in another culture will be the motivation that underpins some of your most crucial decisions in life. Perhaps a particularly good - or bad - relationship has changed the way you view your life and the expectations you hold because of what you learnt about yourself. But whether we all share the same 'moments' or not, one thing is for sure: For each and every one of us there are moments - not just one - but many, that change your life somehow, be it for better or worse.

For me, one such decision began to emerge in my mind in 2009. A seed - tiny and barely nurtured - was planted in my head while I was on a JIGSAW (Juggling Insulin for Goal Success and Well-being) course and involved something about an insulin pump and how useful they could be when you suffered with poorly controlled diabetes. Something which at the time, I rejected without a second thought. But this one little idea began to gather momentum and cause the curious button in my head to need pushing. At first, the thought of an insulin pump with its crude wires and constant glaring presence was something which repulsed me. Even disgusted me, dare I say it. How, when diabetes had already drained so much of my life could this BOX (!) solve any of my problems?

But that's the funny thing about a seed; even in the most harsh and hostile landscape a seed can flourish and develop into the the most breath-taking of plants.

That seed, nestled in my hostile head surrounded by negative thoughts and stubborn ignorance began to flourish. With the wonder of the internet at my fingertips, I nervously started looking up images of insulin pumps and finding forums to piggy-back on and see what people were saying about these pumps. Pretty soon, I stumbled across a blog which would water that seed in my head. This blog was written by a lady I could really associate with. She was my age, she was also diagnosed in 1986 and she was pregnant, which when it came down to it was the only reason I was willing to give this contraption a go. Because one day I wanted to bring a child into the world with the man I had come to love. This blog, was Six Until Me.

This blog was honest, open, beautifully written but most of all, real. The stories Kerri told were not about the horror of wearing a pump or the restrictions it placed on her life. In fact it didn't sound at all like she was mourning the loss of a former life, which was the way I felt when I thought about the pump. It talked of fashion, friends, the diabetic community (something I too was about to stumble on), the promise of a future and of the creation of a new healthy life - one her readers came to know as BSparl (her kiddo!).

It wasn't long before that button in my head began to throb again.

Push me, PUSH ME!

I'd estimate it was about a week after that I first emailed my DSN with a million pump-related questions in my head. My new found fascination with an insulin pump had begun. And once the idea was there - I wasn't about to forget it.

On the 25th January 2010, my life changed forever.

Attaching the pump initially was - I imagine - like watching a monkey use tools for the first time. I was 'all fingers and thumbs', shaking a little and convinced I was doing it all wrong. For the next 24 hours I had this immense awareness of my new pump, almost like when you get a new phone which barely leaves your hand - let alone your handbag - for the first few days after you get it. I started to navigate my way around the menu learning at the speed of light about boluses, basals, daily totals and carb ratios. I imagine you would learn slower if you joined NASA or MI5! But nevertheless, something which only 6 months before had terrified and repulsed me, became interesting and engaging. I started talking to my friends and family about the pump, tricking them into guessing where it was hidden today, because unlike my mistakenly ignorant first impression, the pump can be hidden, isn't a monstrosity and doesn't take over your life.

But no one can go through this alone and surrounded by my team of supporters, I began to explain the pump to anyone around me who would listen. My fiance, who had to earn his degree at the University of Insulin Pumping pretty darn quick, took this challenge in his stride, learning terminology like cannula, bolus and "Darn, I didn't re-fill before we came out!", quicker than you can say 'I love ya'. My mother, who for years held me up when I couldn't manage myself, took delight in hearing that I was reaching my pre-pump goals for the first time in 20 years. My friends, who I have no doubt were intially freaked out by the idea (mostly because their faces told me just that), could not have been more supportive or accepting, when it came to me whipping an insulin pump out from my chesty area!

Before long my own blog, one which began as a project to help me negotiate the psychological and emotional adaption that life on a pump requires, began to connect me with my own diabetic community. It led me to the Diabetes UK facebook site, which in turn led me to some of the most talented, creative, positive and go-getter type people you could imagine. Some shared my story, some had a whole different perspective on things. Either way, I went from being someone terrified and beaten down by my own condition, to someone feeling more in control than in the previous 23 years of having diabetes. I began to learn that blood glucose testing didn't have to be about pot luck. I began to learn that waking up in the morning having had a good night's sleep without hypos, hypers, loo visits and fridge raiding, was something everyone - even me - could expect. No, could demand!

I also began to learn that I was allowed to have far higher expectations of what my range of blood sugars could be. When people used to tell me that us diabetics should be aiming for 4-7mmol (80 -120 mg/dl) I would have laughed (and cried a little, inside), because in my whole adult life I had never had a day, let alone a week when I had acheived those kinds of numbers. At my very best clawing at 'control' with every last shred of energy I could muster, I had never achieved an HbA1c of less than 9.6%. Within 6 months, this had fallen to 8.2%. And I use the word 'fallen' because I wasn't doing any more than normal. Granted, I had begun doing more tests, but tests alone won't change anything. This, had happened simply as a result of my pump. My last A1c was 7.9%, and with the kind of readings I have been having in the last 2 months thanks to adapting my diet to a lower carb system, I have every confidence in the world that my next A1c will be in target.

The last year of my life has been a roller coaster. I have learned about the triumphs of conquering goals I thought were impossible to reach and how it feels to give diabetes a swift kick in the stomach, just as it did to me for all those years. I have learned about the pitfalls of kinked cannulas and packing for holiday with what feels like the worlds biggest collection of diabetes supplies, just in case armageddon comes a knocking.

But the greatest and most significant lesson I've learned, is that there is a vast community out there experiencing all of those highs and lows that kept me in a dark and isolated place for so many years. The friends I have made in the last year and those relationships strengthened by people's acceptance and even interest in this pump and how it has changed my life is a lesson that has changed my life forever. And for the better, much, much better.

I can only hope that the next few years of my life, as I plan my own family and move on into new and daunting challenges, will bring me even half as much knowledge and excitement as the last year has. I can only hope that my circles of friendship will expand beyond those I have already found. I can only hope that this disease which for the first time in my life I feel I have conquered, will bring me as much as it has in the last year.

I am thankful that I no longer feel like the pump is a contraption, a box or a hindrance. Quite the opposite in fact, it is part of me. It is a significant part of me, as it has helped me have the quality of life I deserve and has allowed me to grow, flourish and enjoy life again. I am also thankful that having just passed two enormous milestones, those being 24 years of having diabetes and of having celebrated my first anniversary of joining the 'pumping club', I can honestly say that the latter came from one of the best decisions I ever made.

I am thankful for what I have discovered, conquered and experienced - even in the face of the adversity that comes with this condition.

My condition.

Our condition.